In Hospice care
Hello CSN
This is an update....on March 18th I had my 2nd Radiotherapy Mask made in preparation for twice daily super high dose Radiotherapy, to the same areas plus more , as I had radiated in 2018.
But by the evening of the 23rd, I was admitted to the Cancer Center hospital, dehydrated,getting Lactated Ringers solution to volume up , and being suctioned so I could breathe. Weight that night 64 pounds . Tonight it is 62.6 pounds.
Both my Emergency Dept doctors began pushing Palliative Care and then ultimately hospice , upon my workup / assessment .
I myself had already changed my Code status to DNR, earlier in the week .. My longtime Internal med doctor 100%agreed with me, on the DNR.
I am home with hospice care for now. My condo, wit a total of 24 stairs,--- is full of too much medical equipment.. Alli need are the 2 suction machines.
I'm allowed to be here only with 24 hour supervision. My doctors said I'm at High Risk of death, outside of the hospital .
In the Emergency Dept my doctors put a Hold on my long time ( 31 years) intravenous immunoglobulin infusions, and now they are completely Cancelled. Why?? Because they said I'm dying of Metastatic cancer, its terminal and there is no reason to keep getting very expensive treatments . So, those are over....
Hospice is looking at Skilled Nursing Facilities and there are lots of them around here .
The tumors have spread dramatically . I have a" High Tumor Burden" in my neck. I can easily feel it too, Andi have trouble breathing.
Alright. ... I finally started thinking a lot. Both my Medical oncologist and my Radiation Oncologist offered plans, and I ultimately accepted my RO s plan and signed off on the Risks of my dearth, along with it all ( getting radiated AGAI N in the same areas, risks of death, side effects) and I got my pretty little mask made ...My Techs even cut out the eyes . My R O Saud it would be 2 weeks until treatments started, for the Dosimettrists and the Physicists to figure out targeting on my large extensive new tumor...
Then i end up in emergency dept. Doctors there could readily SEE that I was in no shape for twice daily high dose Re irradiation. Thus began long " talks", with them talking and me writing because I have no voice since this metastatic cancer has reached my larynx.... About Palliative care and then the second doctor pushing for Hospice. I've known the Terminal prognosis already with this new cancer, so it did not surprise me . lone of the doctors has cared for me before. Dr. John so is a Hem/ Onc Hospitalist. He was my doc in June, with pneumonia.
I leave you with his summary of us in a meeting for my advanced care planning.... I'm now tremendously weak , 62'pounds, on high dose steroids trying to reduce swelling and idle nation from the tumors in my throat , trying to help me Breathe. I'm on a lot of meds::::
ACP (Advance Care Planning) by Joshua B Johnson, MD at 3/24/2022 10:00 AM
Advance Care Planning
Advance Care Planning done Face to Face Advance Care Planning was done with: with:
Patient participated in family meeting..
The following was/were discussed: Counseling/Coordination of Care, Diagnostic results, impressions.And/or recommended diagnostic studies
Prognosis Weeks to months
We discussed healthcare options for end-of-life care
We reviewed goals of care
We decided among options for treatment.
Patient endorses concern over ability to tolerate further cancer treatment, understands she has limited life expectancy with or without treatment. She also raises concern about weight loss and malnutrition. Given these issues she is interested in meeting with Palliative Care and referral to hospice.
I spent a total time of 25 minutes doing Face to Face Advance Care Planning.
Joshua B Johnson, MD
It
Comments
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Were goals of care documented this visit?
Yes: Face to Face Advance Care Planning was done with:
Patient participated in family meeting.
Parent participated.
The following was/were discussed: Counseling/Coordination of Care, Prognosis Days to weeks
Patient and family education
More specifically we discussed comfort measures and hospice in the home
We discussed healthcare options for end-of-life care
We reviewed goals of care
We refined goals of care
We decided among options for treatment.
I spent a total time of 50 minutes doing Face to Face Advance Care Planning..
The following questions were asked: Understanding/perception of illness:
(how the patient/family describes illness/prognosis, their perspective on how it has impacted their life, their understanding of treatment options and plan)
Crystal and her mother have a good understanding of the cancer reoccurrence. Crystal has been offered high dose radiation and has decided against it due to side effects. She would like to focus on comfort going forward.
Communication preferences:
(Does the patient/family want to know all the information whether good or bad, are there certain people with whom they do no want their case discussed?)
Crystal wants to know all information and is ok with her mother being present during serious discussions.
Acceptable quality of life:
(what does the patient need to be able to do in order to make the medical care worth it to endure?)
Crystal does not want to continue with cancer treatments. She also understands that the weekly infusions of Cetuximab will not continue with hospice care. She would like to explore medication options for symptom management. We discussed famil Crystal biggest fear is choking during the night. She frequently wakes ups coughing and unable to ve secretions for her throat. We talked about transitioning to Skilled Nursing Facility or to.Hospice House.
Etc
Past experiences with serious illness/hospice:
(Do the patient/family members has experiences with hospice, ICU, dialysis, dementia, CPR, ventilators, and has that given a perspective on what the patient/ family wants):
Patients goals have changed today. She no longer wishes for extreme lifesaving measure.
Hospice discussion was held: Family/patient was open to the idea of hospice.
Hospice criteria applicable to this patient: CANCER: Her Disease has a very poor prognosis
Progression from an earlier stage of disease to metastatic disease with either: A continued decline in spite of therapy
Patient declines further disease directed therapy
Advance Directives,MOST form, and Code Status
Goals of care were changed today
Code status was changed to: DNR/Comfort
Symptom Assessment and Management
Chronic Pain
Nociceptive
Secondary to throat cancer
Treatment plan: Recommend morphine 5 mg oral solution through PEG tube. Please give Ondansetron 8 mg oral solution 30 minutes prior to opioid medication
Dysphagia
Treatment plan: Recommend comfort feeding, spoon feeding small bites/sips as tolerated
Excessive Secretions
Treatment plan: Recommend dexamethasone 8 mg IV daily for Tumour edema (tracheal compression) (J Laryngol Otol. 2016 May; 130(Suppl 2): S198–S207.
doi: 10.1017/S0022215116000633)
Continue glycopyrrolate as ordered.
Patient will need home suctioning set up with hospice services.
Failure to Thrive
Likely due to Cancer, depression, anorexia, tube feeding dependent.
Fatigue
Secondary to: cancer
Treatment plan:
Nausea
Treatment plan: Continue ondansetron, consider 8 mg po q 8 hour to avoid nausea with opioid use.
Constipation
At risk for increase with opioid use. Recommend Miralax daily and senna syrup 17 mg q hs
Plan for Follow-up:
Palliative Care will continue to follow this patient.
These recommendations have been discussed with the primary team and supporting staff caring for this patient.
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Dearest Crystal, I am so sorry you are at this point with your disease. I know you fought long and hard lo these many years to beat this damn disease and not end up in this situation. I will say again you are the strongest woman I have ever known! All that said it is what it is. I am glad though they have you covered well with a plan and I am glad your mother has sat with you through this session so she understands everything they are doing and the options that are there. I am hoping you can manage this and stay at home if possible but really I just want you to have what you want and be pain-free. And it looks like they have you covered with pain meds and I guess if needed can increase the strength or the dosing. Also, I am thankful that you had the time to do your desired planning, and that in itself gives you a measure of comfort. I also notice your doctors are well aware of your situation and have things in place to hopefully help you deal with any situation that arises and I am sure they will provide whatever you need in a timely manner plus. So look Doll you know I am praying for you and thinking of you many times daily as you face this challenging time in your life and I know you will face it with the strength and dignity you have always had in all your challenges before this. I am so proud of you. So please keep us updated as you feel up to it and I and many others will be thinking of you and praying for you.
Love💜 and Hugs🤗 to my fellow cancer survivor LitlCjdoll
Take Care-God Bless-Russ
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Crystal,
I’m glad to see you felt up to getting back on here. You’re an icon of strength for all of us!...
I know you have beautiful memories ... of lovely cakes, champion show dogs and feelings of love and romance etc. that few ever experience. I hope all of those incredible memories visit you often, during this time...
I think about you every day...
Curt
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Thank you both!! Curt, you message is very sweet and timely, and True as well. And that's part of why I chose to change myCode status from Full Code to a DNR( Do Not Resusitate). Believe me, that's a serious undertaking. I had to contact several people ( my doctors ) and they fully understood and supported me 100%.
It's Posted on my front door, and goes with Me to my next residence if there is one.
.For being In the hospital, it's a Purple and black bracelet which requires a Witness a Witness to placing the bracelet on the patient. They make sure you understand the implications and that you can change your mind.
Thank you both for the kind words. Russ, I'm not taking the morphine yet. I do want something good for pain, but inot the Morphine. It's awful.
I'm ju st taking Tylenol 1,000 DM. For now. ... Waiting for a better offering than Morphine.
Back to sleep I hope after taking a bunch of meds
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God bless you, you put up a courageous fight against this disease and helped others along the way. My a you be comfortable and have peace now.
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I was given Dilaudid. It's 10x the strength of morphine with no muddy feeling. That will be my go to when I'm in hospice. Source Energy is all around you now. The bliss you experience when you finally let go of your ego will be a little scary but don't be. Know that your higher self and ancestors are all awaiting your arrival to high five you (metaphorically speaking). I love you Crystal. Just remember love is all we really need on Earth
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Are you going to Hospice? One cannot admit themselves. It's frequently the referral off ones doctor, the stipulation of Terminal disease within days, weeks, or within 6 months. No treatment is allowed for the terminal illness ...
I've had Dilsudid in ICU. I had extremely bad nightmares with it.. This is my second Primary cancer and it's large, extensive, inoperable, Metastatic.
I can no longer speak nor swallow, at all.
My boyfriend Randal died with Metastatic HNSCC, less than 1 year ago. He refused hospice and stayed on miserable chemotherapy for Years. Always on ttreatments, chemo and immunotherapy, and double radiation. Nothing stopped the tumor growth. Nothing. His voice went, then his swallow . Gorgeous 6' 2" very accomplished man .... His caregiver still stays in touch with me frequently.
Now I'm terminal with metastatic HNSCC, as well. My doctors say I have very little time with or without treatment. My Emergency dept doctors who admitted me last week told me I'm in no shape to tolerate more.... Its useless.
I'm curious, do you have metastatic terminal cancer ? Why interested in Hospice, and you said " when " you enter hospice? I didn't see that in your Profile.
If its so, I'm very sorry. These are not the times, to wish for someone with this cancer...
My boyfriend
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Uh, indeed a lot more than " love"..... That idea seems rather nebulous, .... Not practical for me atthistime.sorry
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Hi Swimbody,
When I had to go into the Emergency Dept here, on the written Note orders of my surgeon, whatever day it wss..... It was only 4 Days after that Mask firing to begin my Second round of Radiotherapy .
Needless to say, that's not a good way to starts rigorous trestment. I wss Immediately admitted. My Volume so low they immediately pumped in a bolus of Lactated Ringers solution and antibiotics (sevrral)etc
Then in earnest began talking about my treatment options and palliative care. They discovered I wss open to the discussion.
Since this new cancer has now metastasized to my Voice Box , I cannot speak a word, so I have to write everything to the person.
The 2 doctors who took care of me, one who knows me from admissions last year --- are glad that I'm a clear thinking and very practical person. No silly ideas or emotions, lets just deal with Facts, please.
This wss their mental status report on me at the end of the long Physical findings report ::
:
Mental Status: She is alert and oriented to person, place, and time.
Psychiatric:
Mood and Affect: Mood normal.
Behavior: Behavior normal.
Thought Content: Thought content normal.
Judgment: Judgment normal.
Comments: Patient is nonverbal at baseline but is very good about writing down and conversing in this manner. Mood and affect are congruent with what would be expected for someone with terminal diagnosis
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Are you going to Hospice? One cannot admit themselves. It's frequently the referral off ones doctor, the stipulation of Terminal disease within days,WEEKS or within 6 months. No treatment is rollerblades the terminal illness ...
I've had Dilsudid in ICU. I had extremely bad nightmares with it.. This is my second Primary cancer and it's large, extensive, inoperable, Metastatic.
I can no longer speak not swallow, at all.
I'm curious, do you have metastatic terminal cancer ? Why interested in Hospice??
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Sassy.... Your comment to my post here got to my Inbox, howevrr, yours and another one I was notified of, do not appear here.
I will try to answer a little but I'm not doing well for psst few days, so I'm not up to arguing with you. Here are the facts:;
No, one cannot just check into a Hospice . ( and I cannot imaginr wanting to. I do not want any of it. I'm experiencing all this, its not something you would want . My metastatic cancer is progressing)
For Hospice to accept a person 2 different Physicians have to Certify that the person has Terminal illness. Ad in Days, weeks, or less than 6 month s. No other way to get Hospice care. Below is part of the Palliative Care report on me while inpatient and the rest of that one is earlier in this Post, but here it is again if you missed it;:::::
Hospice criteria applicable to this patient: CANCER: Her Disease has a very poor prognosis
Progression from an earlier stage of disease to metastatic disease with either: A continued decline in spite of therapy.
Advance Directives,MOST form, and Code Status
Goals of care were changed today
Code status was changed to: DNR/Comfort
Sassy, until recently I was stage. III Recurrent. But now with a very aggressive New Primary Cancer which has now metastasized with no hope to treat it -++++ I am now Stage. IV metastatic, with days to weeks as my prognosis .
I have been seen by multiple physicians and providers and they all had to agree with the prognosis and my terminal diagnosis.
I cannot read all of your messages right now because something I'd wrong with it loading in the comments section. And there's another message as well which shows up with no text. Its empty.
I will check later.... Not well today. Go figure
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Sending you loving, peaceful thoughts from Maine 💜
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Thank you. I appreciate you thinking of me, in this season of my life. Its not easy as its progressing.
Hoping you and yours are healthy .
Crystal
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